DISSEMINATION OF GENETIC RISK INFORMATION TO RELATIVES IN THE FRAGILE-X SYNDROME - GUIDELINES FOR GENETIC COUNSELORS

Fragile X syndrome, which affects 1 in 1,250 males, is the most common inherited condition causing mental retardation, Although carrier dete ction for the fragile X syndrome utilizing DNA has now been simplified , genetic counseling and the process of informing at-risk family membe rs remains complex. The purpose of this paper is to offer practical gu idelines to health professionals providing genetic counseling to fragi le X families in order to facilitate the dissemination of genetic risk information to relatives, This paper was developed from a workshop he ld at the 4th International Fragile X Conference. The guidelines prese nted here represent a beginning in the development of an approach to i nforming relatives in fragile X families about genetic risk, and the i dentification of mechanisms to reduce the burden to families. (C) 1995 Wiley-Liss, Inc.